Saturday, March 31, 2012

$17,605.63................

The amount it cost to try and control my Acromegaly every month. One injection. $17,605.63

Never in a million years would I have imagined that a huge 19 gauge needle would be the highlight of my month.It is my medicinal savior. I hate it yet I love it too.It gives me life and takes my life. I hate the thought of having a large needle piercing my flesh every month....having to depend on something so painful to keep me alive.I hate the drive to the next town wondering who will be there this time to inject me. Will she know how to do it or am I going to have to explain for the thousandth time what it is, how it works and how to inject it?Is it going to go in smooth or will I cringe in pain as I feel the alcohol slipping into my new pucture wound? I used to use a cream to numb the skin before injecting but I stopped after a while. I just didn't care any more. No need to numb my skin because I myself had become numb. It was almost as if it was my way of telling Acro to go to hell, I am stronger than you. Nothing you do will break me. I can be stubborn like that sometimes.Even the I.V. nurses argue over who HAS to give me the shot. I actually like it in a sick twisted way.Maybe it is the few moments of sympathy for the girl who gets the 19 gauge needle that no one else gets.I don't know.Just another stupid highlight of my month.
When I first started on injections I was on another med called Octretide which basically does the same thing as the one I have now but with that one, I had to inject myself every eight hours around the clock, 3 times a day. I did that for over a year and I hated every moment of it.That was the first time ever I had to inject myself. It didn't bother me really, but being a cutter a while back, I was experienced in self mutilation....a shot was easy. Oh how I hated having to take the vials with me to inject on time....packing the cooler, gathering the supplies. Seems like my injection time was always at the most inconvenient times. I remember sitting in my car at the park,watching my kids play as I injected. I cried that day.The med had so many side effects. I never felt well...constant diarrhea, swelling, nausea, bloating. I can not remember the amount of times I asked myself if the shots were worth it.A few times,I threw them into the trash. I just could not do it anymore. I was happy actually, when I went in to anaflactic shock from the medicine. My body could not handle it any more. Felt like I was going to die in the ER that day. I couldn't breathe or stop shaking and oddly enough,all I could think of was how relieved I was to have a reason not to keep injecting myself with those damn things.
The injection I am on now, Somatuline Depot, is much easier on my body...very few side effects.But, it also has stopped working or not working hard enough. My IGF-1 levels have begun to rise once again and I am already on the highest dose. Lord help me. This medicine HAS to work for me.
Just a note on the cost of this med. I am so very grateful that my insurances cover the cost of my med but it does make me feel very guilty every time the statements from the hospital come. I can't help but to think of all the other things the government could do with that money.Just another reminder of how this disease causes destruction.

Now,despite the pain and discomfort, I enjoy my Somatuline injection every month. I can feel it everywhere the day the med wears out of my system which is always a few weeks too soon. All the breakthrough symptoms start flooding back into my system and functioning normally is difficult...pain and swelling come back ten-fold.Once I get my injection, I feel better within an hour. Doctors say it is not possible for the med to work that quickly. I ask them "Have you ever had Acromegaly and injected yourself with this med?". I think not. I know my body...maybe it is mental,maybe just the thought of having the med in my system creates the "feel good" until the med does it's job. I don't know really but I do know I feel better soon after and that's good enough for me.

Sending out HUGE hugs and many thanks to all those who are faced with the task of injecting those of us who can not do it ourselves. I appreciate you. I know it is not any easy task to inject someone you love, knowing that it is going to hurt them in the moment and the fact that you do it whether you like it or not shows how much you truly care about us.

Monday, March 26, 2012

Breakthrough Symptoms....horrible reminders.

 This is me just two days ago feeling good, messing around with the webcam,feeling cute! Medication flowing through my body doing what it is meant to do...controlling the symptoms of Acromegaly.







.........And here is me (below) upon waking this morning ...medication no longer flowing through my body, at least, not enough to do any good. Symptoms rushing back into my body once again declaring war. Mornings like this I do not want to fight. I just want to lay quietly in bed and pray for the next two weeks to go by quickly. Two weeks until my injection...two weeks until my sanity returns...two weeks of medical hell. Worth the wait? Absolutely! Functioning properly without the medication in my system is not impossible but also not pleasant in any way. The huge 19 gauge needle that I look so forward to having pierced into my flesh is a Godsend, an opportunity to feel a little more "normal". The needle can not come quick enough. Sometimes I wonder if the medication does not last because my body has built a resistance to it. Seems to me it used to last. With each passing month now it appears to last a day less. I am scared. This has to work. the other injections sent me into anaflactic shock. That day is embedded in my memory as I thought it was my last.
   This treatment messes with my mind. Every month... for two weeks after the shot I am feeling great. I feel like I am beating this stupid horrific disease. Even have moments where I forget I have acro...very short brief moments,but moments none-the-less. I will take whatever tiny bit of normalcy I can grab on to. And then it happens, I wake up. Swollen beyond belief, sores on my tongue,dry blood trickling down the corner of my mouth, head pounding,cranial pressure, feeling like a truck ran me over in my sleep..then backed up and ran me over again for good measure. Joints are swollen, depression creeping back,heart racing,struggling just to hold my head up. Just want to lay in my bed and hear nothing, see nothing, be nothing.
  Within a few days my body will again adjust to the "new" me and I will function somewhat but not how I need to. I can hear the comments coming like a wall of water in a Tsunami. The comments will hit me hard and add to my suffering. "dont you have anything better to do than lay around all day"...I have a million things I would rather do. "Why aren't you cooking dinner?" ..because the sight of food nauseates me right now and my hands can not hold the pans. "Just take some Ibuprofen and do what you need to do" ...Ibuprofen is for minor aches and pains, not feelings of being crushed in a compactor or pounded in the head with a mallet. "Call the doctor, make an appointment"... so he can tell me I have Acro? so he can say just take pain pills and wait it out. Thanks for the insight everyone everyone but I just want to be left alone to deal with the reminders that I have Acromegaly and this is what it is. Physical torture, mental torture. I use the word suffer so others can understand the extent of what I deal with every day but I am not suffering. People can either choose to suffer or choose to fight. I am a fighter. I try not to let my life be miserable but some times these breakthrough days are enough to do in even the strongest souls.
 








Saturday, March 17, 2012

Dear Doctor..



Dear Doctor,

   You have been seeing me for over a year now and I think it is about time that you get to know me. First, let me begin by telling you that my name is Sheryl Colstock, not acromegalic patient. I am Sheryl who has Acromegaly not an Acromegalic patient named Sheryl. You may think it is the same thing but, in my mind, it is not. Always acknowledge the person first, the disease second. I have acro. It does not have me. I call you Doctor out of respect because you worked very hard at being "Doctor". Well, I have worked very hard at being just Sheryl, please address me as such.
   I do not think you quite realize how important you are to me. Do you realize that you have my life in your hands? Every decision you make in regards to my health affects me greatly. I would describe our relationship as one of love and hate. I love that you are trying to help me and make my health more stable but I hate that you tend to leave me in the dark. Don't think that I do not hear you whispering outside my patient room nor see the looks of annoyance on your face when I ask you questions that I feel are important. If I understood everything about this disease and knew where you were coming from when you spoke, I would be standing right next to you sporting a white lab coat and stethoscope too. Sadly, I am just Sheryl who has Acromegaly and needs to ask questions and maybe even be told things over and over again before I comprehend it. I am sure you will agree that, the more I know about this disease, the more we can work as a team instead of the you as the captain just barking out orders! 
   Doctor, I am scared. I am angry and I am frustrated. Surely if you could step into my shoes you would feel the same. If you try a little bit, you can probably even imagine at least a little of what I go through. After all, you are the one who is supposed to know all about this! I do apologize for cursing you out and blaming you under my breath. You are an easy target for my anger because you are the one that decides if I get better or worse. You did not give me this disease nor did you ask to have me as a patient. I will try harder to be patient with you if you will do the same for me.
   I do not need your sympathy but a little compassion would be helpful. Wouldn't hurt to occasionally look at me or touch my hand or shoulder and tell me you are doing everything in your power to help me or that everything will be alright. Don't assume I have tons of support when I leave your office because I do not. I know your job is not easy. Lots of people, like me, look to you to create miracles. Some even put you right up there with God thinking you can miraculously heal people. I know you are not powerful in that way but I do know that you possess the knowledge and tools to help me. I would just like your actions to reflect that. I am feeling like I am getting the run-around, like you are tired of dealing with me. Trust me, you are not alone in that thought if you are tired of me and my case. Lots of people are, including me.... and my ex and my family and friends who used to be there for me.
   So, in closing Doctor, next time you open the patient room door and see me sitting there, please walk in with a smile to reassure me that you dont mind me being there....again! Please look me in the eye with interest when I ask you questions so I know that you are listening. Please just tell me with sincerity in your voice and your eyes that you are doing everything you can to help me fight this disease. You can still be team captain but please let me join the team. I am tired of sitting on the bench.
 
Sincerely, Sheryl who has Acromegaly

P.S. Have I told you how much I need you?

Wednesday, March 14, 2012

A Colo-what? A scope where!!!

Colonoscopy....ok, so maybe it is not as bad as the picture, allthough, that is the first thing that came to mind when I was told I needed one! OUCH! Actually, a colonoscopy is not painful at all, a little discomfort here and there maybe but not painful. I guess it was about a year or so after my dx of Acromegaly that the endo said I should have a colonoscopy. My first thoughts...Aren't those for old people and men? I knew of them because my father had many done over the years. I never did ask him exactly what it was though. All I knew was it involved a really long scope and my big fat bare vulnerable rump! Really? Are you sure I NEED this? Two weeks later I found myself at the pharmacy picking up a gallon container of powdered something and a flavor packet. Oh great! I get to pick a flavor. I thought if I had to drink that much I might as well pick a favorite. I chose grape but a woman quickly interrupted me to tell me that the lemonade was the best one to choose. Ok, I like lemonade. I can handle that too. I went home and read the instructions carefully as I was told to ...light diet, no food the day before and drink this liquid at the times given...no problem...OR SO I THOUGHT! Lemonade MY ASS!!! Oh my gosh, it was the most godawful liquid I have ever tasted in my life. Even the catscan juice was not this bad! A gallon, really? the whole effin gallon??? Aaaargh!!!!!! I think I can,I think I can, I think I can, I dont want to, I dont want to. No choice, down the hatch, sorry tastebuds, lemonade will never have the same meaning again. To this day, everytime someone mentions colonscopy I automatically have that taste in my mouth and the nausea that accompanied it. Thank God these things are not yearly! Anyway. to the test....As if lying on a table on my side with everything draped except for my butt was not embarrassing enough, My doctor whom I never met walked in. Stares at my butt for a monent and says in his deep Scandinavian accent "what are you doing here?" I am laying naked on a bed surrounded by scopes and you are asking me what I am doing there. Dear Lord help me! Great, he has no idea what he is even doing? I told him I am here for a colonoscopy obviously. He replies, clearly annoyed, "you are too young for a colonoscopy" Wonderful, pass me my panties and I will be on my way! Evidently somewhere in his schooling they forgot to teach him that people with Acromegaly exist and are prone to polyps. I tell him I have acro, his response "and????" I think to myself, lay down and I will show you where to shove your scope! He was so incredibly rude. Had I not been drugged by now, I would have gotten up and left. The sedation wore off after a short while...guess he also did not know to adjust the dose for my size. No matter to me though. It was sort of interesting watching everything on the camera. There was no pain involved, just a little discomfort, which one would expect having a two foot long scope shoved up your rear :-D  A few polyps removed but they were benign, no biggie....I am good for another three to five years...which is good, hopefully by then the doctors will have less to work with lol!
Make sure those of you with Acro get your colonoscopies done at least every three- five years. Do not take "no" for an answer! It is an important issue.

Monday, March 12, 2012

Mental Illness

After chatting with a dear friend this evening, I decided to blog about a subject that nobody likes to speak about.Mental Illness.
As many as 1 in every four people suffer from some sort of mental illness. I have never been afraid to speak about my mental illness when i am asked but then again,most people never think to ask. They see my physical ailments and changes but they can not see the silent pain I endure, so they do not think to ask and I do not just throw it out there either...I mean, really, it is easy for me to stand there and say "this weather is making my joints hurt more".People understand that pain, but how often does the opportunity come up for me to say " So, do you see the walls closing in on us too?" or "So, how about those Lakers, number 19 kept staring at me throughout the entire game and I am pretty sure he followed me home".
Here is my story of mental illness..I will try to make it short. A lot of details are left out because there are way too many too list!
Just a quick background of things in my past that may have triggered my mental illness...rape and molestation, bullied my entire life from kids at school and people in the community,overweight and unattractive,left at the bottom of the food chain, used and abused by several men,diagnosed with two rare diseases...........those were the major things anyway.
Despite everything I have been through, I look back now and wonder how much of my mental illness was triggered by trauma and how much was related to physical illnesses and chemical imbalances. Sure I had more than enough reasons to be depressed and feel like I was losing my mind but I am not convinced it was all mentally/emotionally based. My problems began around the age of 5. I can remember laying in my bed at night terrified of clowns and open windows. I sleepwalked at night. My parents had to keep the doors locked because they found me outside in the street one night. By age ten I would lay in the dark and feel like the walls and ceiling were coming closer to me. Thought for sure every time that I was going to be crushed.By age 10, I was seeing things, hearing things,feeling depressed and anxious. I would rock myself when I was alone. Age 12, puberty began.I was a whirlwind of emotions every day, highs and lows.I became a great cutter. Self mutilation somehow made me feel better but I was really doing it hoping that someone would notice and ask me what was wrong.....nobody ever noticed. Nobody asked. Instead I took on the nicknames "Bambi" because they thought I was bamming into things and "clutsy".My dad's nickname for me "stinky". My Grandmother and aunt named me "brat" which I never understood because I was always the quiet withdrawn one. By age 15 I became suicidal and was having periods they called "blackouts". I was conscious but never had any recollection of what I had done during these times. Was also fainting at times and seemed to come across as "high" even though I have never in my life even tried a street drug or taken meds not meant for me. Depression was very bad now and headaches began. I ended up hospitalized for over six months in a behavioral institute. It was there that I was labeled manic depressive and bi-polar along with severely chemically imbalanced. I didn't care. I didn't care about much of anything for years. By age 19 things were looking up as far as mental issues...depression continued but meds were no longer needed. After about five years or so, I noticed that there were times when i just seemed to be in a fog, i didn't worry though. I was still in control.
When I was diagnosed with Acromegaly in 2007, my world seemed to come crashing down on me. My mind was uncontrollable as were my emotions.I found myself very mentally and emotionally vulnerable. Within six months I was declared SMI by the state of Arizona. For those who are not familiar with the term SMI....it stands for Severely Mentally Ill. All the old feelings and symptoms I had crept back into my life and brought their friends with. I began having nightmares on a regular basis, all centered around my death. Anxiety got the best of me too, I began isolating myself in my bedroom. It was my children that had to force me out to cook food and take them places. I was content sitting all day in the dark, laying down wrapped in a blanket, holding my giraffe and crying. My life lost meaning for a while.Even the times I would go out, I felt alone. I knew people were around me but I could not really hear them or see them. I remember times that I would just become so outraged for no reason. Thank God I could feel it coming. I sounded the warning to my children every time to stay away from me. My babies were so confused by all I was going through that there were times that I just knew they would be better off without me. I had wished Acro was a fatal disease.Suicide thoughts crossed my mind a time or two and I cut for the first time in over 15 years.Damn this fucking disease! How dare you ruin the lives of my children! You want me? Take me now. I would do anything to not hurt my children in any way. Thank God my daughter knew me well enough at her young age to tell me when she saw changes in me. "mom you are not eating again. Mom, you need to bathe, Mom, you have to feed us every day. Mom, you have to come out of your room." That lasted about a year or so. I am so grateful for my children staying by me and not resenting me.
Stress is powerful when not controlled. It makes the mind do and think crazy thoughts. With the help of therapy, psychiatrist and counseling, friends, my children and God, I have found peace in my life. I still fight the depression and sometimes the cutting too. Mood swings come and go on a smaller scale and the anxiety still comes to visit.Sitting in church I have to be in the very back row, I can not concentrate on the sermon if anyone is behind me. I feel like my mental state at times is in fact mental but other times I feel like it is Acro/hormone related, especially the times where I cry apparently just to cry or get angry for no reason.
I hope that by me posting this, others with mental illness will understand that they are not alone and it is ok to talk about it. Mental Illness is just as much an illness as Acromegaly is. There are no cures for either but they can be controlled. Love yourself. Understand yourself. Take the time to be your own best friend. Things can be better but you have to work at it. Like any other disease, if you ignore your mental health issues they will get worse, not fade away.

****For those who have been messaging me since I blogged this..I am doing great now. There have been no more issues with suicidal thoughts or cutting. I love myself and my life. I have come to terms with many things, the biggest one being that this is my life, this is who I am. Everything in life happens for reason. The reasons for all my happenings, I believe, was to make me the strongest person I could be and to put me in a position where I could not just empathize with people in need, I could sympathize with them. I believe with all my heart that my "title" in life is Caregiver. My unconditional love for people began at a very early age for me. Nobody in my family is like me in any way so it is not something that I learned, it was embedded in me. I look back and I am not bitter by all the trauma, I am blessed. The only thing that has ever made me truly happy in life, besides my children,has been helping others. I am honored God has chosen me to work along side of Him. Do not feel sad for me. I am not suffering but, there are many others who are. Please take your compassion and concern for me and gift it to someone who really needs it. There are many people in this world who have not found peace. I love you all!

Really?? You Screwed up again!

I am blogging this morning out of pure anger and frustration. A few weeks ago my doctor ordered an OGTT (oral glucose tolerance test)..GH based. That is the test where they make you chug 75mgs of pure sugar water and then draw your blood every hour for three hours. Not fun for for anyone but way not fun for a diabetic like me. The test is meant to spike your sugar, then make you crash........and I crash big time, every time. This test takes four hours but I pay the price for it for a few days after. Anyway.....I had this test done two weeks ago only to find that they forgot to include my GH levels. So i go back again and once again they screw the test up. This morning I go to the lab, now very frustrated, wait for an hour for my name to be called, already feeling shaky because I have not eaten. Having prepared myself for the days to come mentally. I figure, this time I am going to make sure they do it right! Sheryl Colstock? Yes. "are you fasting?" Yes. Have a seat. :o)  I sit in the dumb chair that sucks your butt down and seems to create a seal to hold you in..uncomfortable to say the least. She draws a tube of blood and says "ok, you're done.have a nice day". Wait a minute! Where is my liquid bomb I am supposed to drink? I have two orders today. She just forgot, I am sure sure. I brought an order with me and another that was called in. She walks away to check, obviously bothered by the fact that I am questioning her thoroughness. She shows me the paper work......... Failure number three. The doctor screwed up this time and ordered a GH and Insulin level instead. My insurance already hates me and wishes me dead because my medical bills are already well over 20 grand a month. I am sure one of these screw ups in going to be the straw that broke the camels back! It takes me weeks up to months sometimes just to get certain tests ok'd by my insurance. I am working with a neurosurgeon, PCP and a lab. How is it possible that at least two of the three can not get their data straight and order me the f***** right test! These are the people who have my life in their hands? These are the people that decide my fate? I am doomed. I mean, c'mon! It is a frickin blood test, not rocket science!!!!!!!!!!! Situations like these are the things that trigger my anger and frustration and make me want to say , enough already, I have had enough.........no more needles, no more meds, no MRI's, no testing, no surgeries....no nothing! Just leave me the hell alone. Thank God for giving me and abundance of strength and patience because, without it, I may be here.
............Back to the drawing board...call the receptionist and ask her to once AGAIN get an authorization for an OGTT w/ GH draws and then call the nurse and ask her to ask the PCP to call the nurse of the Neuro to get the right lab codes. Then fill out the lab order correctly and call it into the lab. Lastly, wait another few weeks for permission to go have it done. Two more weeks to wait for results. Another few weeks for the neuro to call. Good thing I do not have any other responsibilities to tend to and can dedicate all my time to my health. OH WAIT, I almost forgot I am a single mom, chaffeur, housecleaner,cook, bill payer, grocery shopper, dog walker, errand runner,caregiver and support system. Imagine that.

Sunday, March 11, 2012

My Medical Issues


Thought I would make a list of my medical issues to let others know what I am really dealing with. Here goes! 
  • Acromegaly
  • Multiple Endocrine Neoplasia Syndrome type 1
  • Neuropathy
  • Carpal Tunnel
  • Degenerative Disc Disease
  • Degenerative Bone Disease
  • Osteopenia
  • Hyperparathyroidism
  • Vitamin D deficiency
  • Hyperinsulinemia
  • Diabetes 2
  • Asthma
  • Allergic Bronchitis
  • Scoliosis
  • Eczema
  • Bone spurs
  • Calcified Ribcage
  • Arthritis
  • Osteoarthritis in back/hips
  • Bi-Polar
  • Depression
  • PTSD
  • Fibromyalgia
  • Hypoglycemia
  • H palori
  • Vision Loss (dx unknown)
  • Hearing Loss
  • Temporo Mandibular Joint Disorder TMJ
  • Migraines
  • Nausea
  • Chronic Fatigue Syndrome
  • Prognathism
  • Frontal Bossing
  • Hemmoroids
  • Skin Tags
  • Boils
  • Kidney Stones
  • Bladder Control
  • Sleep Apnea
  Have had in the Past
  • Endometriosis 
  • Polycystic Ovarian Syndrome
  • Cavity Tumors
  • Right Sided TIA
  •  
Well, There ya have it! That is my list of health issues that I deal with. Every day is a combination of health issues. Some days I deal with a few. Some days I cope with a handful. Some days they all gang up on me and I just want to curl up and cease to exist for a little while.
  •  


Multiple Endocrine Neoplasia Syndrome

Multiple endocrine neoplasia, type 1 (MEN 1), sometimes called Wermer's syndrome, is a rare disorder that causes tumors in the endocrine glands and parts of the small intestine and stomach. In MEN 1, the endocrine glands — usually the parathyroids, pancreas and pituitary — grow tumors and release excessive amounts of hormones that can lead to disease. However, the tumors are usually not cancerous (benign).
The excess hormones can cause symptoms such as tiredness, bone pain, fractures and kidney stones, as well as stomach or intestinal ulcers. Although MEN 1 can't be cured, if regular testing detects problems, doctors can provide treatment as needed.
MEN 1 is an inherited disorder, meaning people who have the gene mutation can pass it on to their children. Each child has a 50 percent chance of inheriting the disorder.

        I was diagnosed with this rare disease two years after my Acromegaly diagnosis....Again, on my birthday! I guess I was not as devastated with this diagnosis because I was still numb from the acro diagnosis two years earlier. As I became more sick over the years the endocrinologist began to question rather or not there was more going on with me.I had symptoms that did not coincide with Acromegaly. She sat me down and asked me, what seemed to be a thousand questions, but I am sure it was not and there was no way humanly possible for her to ask me 1000 questions in 15 minutes, the maximum time I was allowed for a visit. Questions answered, tests ran...." You have Multiple Endocrine Neoplasia Syndrome type 1, it is a very rare and serious disease" Great! If one does not do me in than the other will.
The basis for my diagnosis this time. The three P's are affected..Pituitary (Acromegaly), Parathyroid (hyperparathyroidism), Pancreas (diabetes 2 and hyperinsulinemia).Basically your entire endocrine system becomes affected and pancreatic cancer is very common. Some of the symptoms I had been experiencing that the doctor felt were more fatigued than the usual fatigue, sensitivity to hot/cold. Summer time I wore hoodies and winter, my kids froze while I was cozy in a tee. Also, began having alot more GI issues than normal, kidney stones frequently, nausea,weakness and the onset of Osteoporosis...often felt like I had a horrible flu as well. In my earlier years I had endometriosis and polycystic Ovarian Syndrome as well. All related, now I know.
There is not anything that can be done specifically for MEN1. It is just constant monitoring, tumor searching, lab testing and treating the symptoms as they arise.

http://en.wikipedia.org/wiki/Multiple_endocrine_neoplasia_type_1

Saturday, March 10, 2012

My Many Faces of Acro


These are my many faces of acro. To the left is a photo of me at 19 years old, the time when I began to grow again. The photo on the right is me at my heaviest,age 26, before acro diagnosis. I was eating carbs like crazy. The cravings were controlling my life. I would gorge myself with food and then sleep 16 to 18 hours a day. I stopped weighing myself at 312 pounds. I was always too tired to do anything. On top of being so overweight, I was also having problems with major depression, Endometriosis and PCOS.
This photo below was from 2008, just 6 months after my diagnosis...levels at 976,I was just beginning injections to control symptoms. I never had surgery because nobody could find any tumors. I remember the woman taking the picture telling me to try to open my eyes. I was so swollen, my eyebrows made my eyes look like slits.
This is me now. Still no surgery and my levels are out of control at 512. The swelling is not too bad but my jaw does continue to grow. I still have frontal bossing but all in all, I am pretty darn cute :o) My face has definitely changed a lot over the years but whose face doesn't change over the years!



Friday, March 9, 2012

The Magic Maker


A friend of mine, who also happens to have Acromegaly, jokingly said I should blog about him when I posted in our support group asking for suggestions on subjects. Be careful what you ask for Mike!
Here goes! I will keep this short and sweet. Mike is cool and awesome...two words he favors in conversation. He has a laidback easiness about him which I enjoy as well as many others in our support group do. Mike is an awesome magician, or so I hear. Haven't had the chance to see his magic in person..yet...but I will soon enough in Vegas! I have experienced a bit of his magic though. He probably does not even realize that he is performing when he is. I know this much.. Mike can make coins disappear, but not his Acro. Mike can make cards change their appearance, but not his own. There is one thing that Mike can do with his magic though that he has complete control over, knows by heart and can perform anywhere in any way on anyone. Mike has the magic to turn his friends' tears into smiles and despair into hope. That is magic embedded in his heart and in his soul.That magic is not something he learned from a book or can teach to a crowd. It is special magic performed by a magician like no other. I love Mike for his unconditional love for others like him, like us that are struggling with this, not so magical disease. My wish for my favorite magician in the world... Abracadabra Kalamazoo **POOF** Acro Be Gone!!   Luv Ya Mike♥
             

Thursday, March 8, 2012

Lost in a Crowd

Growing up, no matter where I was or who I was with, I felt lost, like I just did not belong or fit in. Loneliness and isolation were nothing new to me but it was not overpowering, I was still able to find some enjoyment in my life at times. Somehow when I was diagnosed with Acromegaly, loneliness took on a whole new meaning to me. Those three haunting words "You have Acromegaly" sent me spiraling into a depression that locked me up and threw away the key. Just when I thought I was old enough and mature enough to know who I was and where I was going with my life, this disease entered my life, completely uninvited and took over. After my diagnosis I tried very hard to find support, someone who could understand me. I looked to my family and only found silence. I will never forget the day I went to tell my parents about my diagnosis. I waited a few days to regain my composure. On my way to their home I kept re-enacting in my head, how I would tell them what I had. How do you tell a parent that their youngest child may be dying? I felt like I was dying at the time. Upon arriving at my mom and dad's house, I turned the van off and sat there for a moment giving myself a pep talk silently "c'mon Sherry, you can do this" I pictured my mother bursting out in tears and my father holding me and telling me everything would be alright and that they would help me the whole way. I took a deep breathe and walked in. "Mom, Daddy, sit down..I need to tell you something. I went to the doctor a few days ago for my results" now in tears, "I have a brain tumor. I have a chronic disease called Acromegaly and there is no cure" I sit briefly and wait for the tears and embraces....nothing. Ok they are in shock,I will give it a minute to sink in....anytime now, is that a tear? No. No tears.No hugs. No questions. All I got was a few words from my mother "Oh well,(pause)What can ya do.(statement, not asking me).My father asked if my van ran ok on the trip down to the doctor. I was numb. Can they not hear me! Do they not see my tears and feel my heart sinking into my stomach? I knew at that very moment that I was going to be alone in this journey. Sure I tried other avenues for support...friends, other family, church...but it was "cover-up" support. Ya know "call me if you need anything" "I will pray for you" "make sure your kids help you around the house" There were a few exceptions to my lack of support. These people would do anything for me if I asked but I do not see or hear from them hardly ever. In the beginning people were kind and had many well-wishes and helped a lot financially but I think I wore out my welcome in their lives in a very short period of time. Little by little my friends and family disappeared completely. Was I a burden to them? Were they tired of my complaints...even though I never complained much out loud? Do they think I was miraculously cured and no longer needed them? Were they using me for brownie points with God? I had a lot of questions and doubts and concerns running through my mind. I could never walk away from someone if I truly cared about them.
So, here I am five years later, still not much of any support here where I live. I can be standing in the midst of a crowd of a thousand people and hear nothing and see nothing.I am alone in my mind. Sometimes I felt like I was not worthy to be cared about or to be loved.I have decided that I just need to surround myself with positive people who truly care and love me unconditionally. I do not expect pity or sympathy or favors or great acts of kindness because I have a chronic disease. I just want someone to listen to me when I need to say something or give me a hug when I am down or just hang out with me sometimes. I do not need those people in my life that walked away when I needed them most. I do not hold anything against them and I am not bitter. Some people just can not deal with those who are very ill for whatever reason. Some may feel guilty for being healthy or for being able to do the things I can not. Nobody has ever told me why they have left me. I can only speculate. For every door someone has walked out and closed in my life, someone awesome has re-opened it and walked in. I may not have much support at home but I have tons of support from others just like me who have Acromegaly. What more could I ask for?

Tuesday, March 6, 2012

A Little Resentment Maybe?


Breast Cancer Awareness, Relay for Life, Jumprope for Heart, Jerry Lewis Telethon, yellow ribbons, pink ribbons, green ribbons........So many organizations raising awareness, raising funds, getting answers, finding cures. Awesome!....but where does Acromegaly fit in? It doesn't and that is a problem for me. I realize that Acromegaly is a rare disease that most have never heard of it but my heart does not remember that when I see all the huge campaigns running to raise funds and awareness for other diseases and conditions. What makes their diseases more important than ours? Who cares if we are dying or suffering? Who wants to help US find a cure? Don't get me wrong, I am elated that people with cancers and Alzheimer and MS and MD and so on are finding funding for research and cures because I know now first hand ,how important it really is, but it does not stop me from feeling a little bit of resentment though. I want to see ads for Acromegaly Awareness month and receive phone calls asking for donations to help patients with Acromegaly. I want the damn ribbon of support, just a stupid little ten cent ribbon ......something to wear on my shirt and slap on my car for all to see to show my support and hopefully trigger people to ask me what I am supporting.
I know all this will happen some day, but we need it to happen now. We need research now. We need a cure now. I am listening to friends with Acromegaly saying they want to just give up. They are tired of fighting.  My eyes tear up every time I think about Acromegaly taking another precious life. I THANK Wayne Brown, founder of Acromegaly Community, for all his endless hard work. He is moving us to where we want and need to be. Have you asked Wayne lately what you can do to help raise awareness? Be proactive!

Let me add before I close that I do proudly wear my Acromegaly Community blue bracelet and my Acro t-shirt. A little story about my support bracelet. It was my first day wearing the bracelet. I was sitting in a waiting room waiting to be called back. A man sat quietly next to me for the longest time. All the sudden he says "Is it working?" Bewildered, I say"Is what working?". He replies, "are you Curing Loneliness" (written on the bracelet)My reply" You are talking to me aren't you?" I love that story! I went on to tell him about Acromegaly and he was genuinely interested.
My prayer for tonight, Acromegaly in shining lights for the world to see!
     "Alone we are rare, together we are strong"

Aren't You Embarrassed?

A friend of mine messaged me last night to ask me how I could post the pics I have posted on my blog. He said "Aren't you embarrassed?". Mind you, he said it lovingly and not in a way that I took it to mean embarrassed to show my genetically altered jacked up face. He simply meant, am I not embarrassed to be so bold as to show the world my "flaws". My response; I am not flawed in any way.
Flaw; physical blemish: a physical disfigurement that prevents something from being totally perfect and detracts from its value              I am perfect just the way I am. This is what God has made me and God dont make junk! AND my physical features certainly do not lower my value in any way, shape or form. Regardless of what I look like or how I change, I am still the same loveable, caring ,compassionate me and I would not change "me" for the world! I like me.

I am coming out, persay, and showing everyone the real me. No more photoshopping photos (except for the wonderful teeth whitener option). No more lookin for just the right light and finding just the right angle to hide my portruding jaw and my big nose. No more smiling with my mouth closed to hide the gap and jacked up teeth. No more taking pics from far away or chopping them off at the waist to hide my rump or pointing my legs inward to make my thighs appear more thin (learned that one from Tyra Banks).
How can I be a true advocate or role model for someone else if I am not proud of myself in my entirety. If I do not show the real me in my pics I post here, then how do I educate both those with and without Acromegaly. I want those with acro to see that they are not alone and it is ok to not hide what they think are "flaws". I am just like them. And for those who do not have acro, I want them to see what we deal with but at the same time I want them to know not to feel sorry. Someone loses their sight, they adapt. Someone loses a limb, they adapt. Acromegalics grow and change physically, we adapt.........it is not the end of the world, even though at times it sure does seem like it. We are human. It is ok to miss what we once had. Do I ever wish I had my body back? Sometimes yes. Sometimes no.I was never in the running for beauty queen, nor was I "quite the looker" or even a magnet of any kind. I was plain Jane and the girl no guy wanted to even be friends with let alone be with romantically involved with. I am just grateful  to have a body to house my wonderfully gorgeous heart and soul. I am beautiful as are all my friends.
        

Who Hi-Jacked My Teeth?

........or should I ask" what jacked up my teeth? Yes, "jacked up" perfectly describes a little more havoc Acro has created for me. I used to have a close to perfect smile...straight white perfectly spaced teeth, no underbite, just right. Now I look like Jack-o-Lantern gone bad! lol  First let me say that I whitened my teeth with photshop. The medications have yellowed my teeth to the point where there was no way I was posting the true color of them here up close! With that being said...everything else is real. I am not, repeat NOT missing a tooth! My jaw has grown so wide that my teeth have seperated and crammed themselves together on the bottom. I have noticed recently that my upper set of teeth are now beginning to seperate too. I have had to have many teeth pulled in the back because the shifting of my jaw and growth got to the point where my molars were being grinded down and eventually crushed. My teeth are all loose due to the spacing so I have to be careful with what I eat. My jaw no longer comes together. When I close my mouth, only two teeth actually touch and only on the left side. Chewing food can be difficult at times. Things like steak, porkchops I avoid eating in public because I look like a cow chewing cud when I eat them. They are also choking hazards for me because I can not grind the meat down enough to a safe size bite. Spaghetti, tortillas, lettuce...flat foods are hard too. They slip right through my teeth! I have to use my tongue to push the food up against my teeth to break it down. Guess I would say that I choke at least three times a week on food. Not great statistics! Eating a big meal can be exhausting and tends to cause me alot of jaw pain afterwards.There is not really anything that can be done at this time to fix my teeth in any way or my jaw because I am still growing. My levels are not under control. I could go through a very risky painful surgery to try and fix my jaw but it would grow right back. So, until I have been under control for 18 months, doctor says no fixing anything. I have gotten used to the way I look and I have adapted with eating. As long as I can eat my Oreos, I am good :o)

Good Thing I have a Big Mouth!


I have been accused on occassion of having a big mouth throughout my life. Little did I know that my "big mouth" would eventually become necessary to house a huge tongue...yet another sign of Acromegaly. The pictures depict my tongue on a good day. On a good day, I can close my mouth and swallow with no problem. Sadly, good days are few and far between.On a bad day my tongue swells so large that I can no longer close my mouth. It just sits in there resting between my upper and lower teeth..well, what's left of them...and the tip of my tongue slips thru my lips. Biting my tongue has become common practice for me and every morning I wake up with bite prints across the tip of my sore tongue. I am often caught literally with my tongue hanging out out of my mouth, almost chimp-like, with an occassional drool running down my chin. How embarrassing is that! Drooling mid-conversation is just something I have adapted to. I tell people, "excuse me, I'm teething". I have a fear of my tongue swelling to the point where my airway is completely cut off, I do not breathe through my nose at all. Wonder how much more my tongue can possible grow? Hopefully not too much more; it is already wreaking havoc in my mouth.Oddly, I can remember about ten years ago, 5 years before acro DX, entertaining my children and my nephews by sticking my tongue out and letting it flail back and forth while shaking my head. Kids thought it was hilarious. Little did I know at that time what was behind the enlarged tongue.
I used to have a big mouth, now I bite my tongue :o)

Monday, March 5, 2012

My Obsession with Giraffes

I have a small obsession with giraffes...this began back in 2007, shortly after I was diagnosed with Acromegaly. I think it began because I was hurting emotionally and the first thing I grabbed was a stuffed giraffe I lovingly named Georgia. All 208 of my giraffes are named Georgia actually. The reason for this....my memory now sucks. If they are all named Georgia, I will never forget their names! Anyway...a few years back my son, Junior asked me why I love giraffes so much now. I told him that I did not really know. With this he quickly and proudly let me know that he had a theory as to why I love them. Junior's explanation "Mom, maybe you love giraffes so much because they are the tallest animal in the animal kingdom and you people(meaning those with Acro) are the largest people in the Human Kingdom. You have something in common. You can relate". I love my child in all his wittiness. He comes up with some good explanations but this one took the cake. Could he be right? Is he on to something? I am not sure because I myself truly do not know but I am going with his reasoning.
   Touching on the subject of people with Acromegaly being tall....it is really those with gigantism that end up being super tall. It is a form of Acromegaly..the only real difference is whether or not your pituitary tumor begins before or after puberty(when growth plates close). I have always been tall all my life but my height comes from my fathers side of the family. They are all very tall and skinny. My mothers side are mostly all short and heavyset. Lucky me got the best of both and ended up fat and tall...just what every young teen girl hopes for. I was actually a bit shocked when I went to an Acromegaly Community gathering last year in Las Vegas. I really was expecting to find a group of tall people. I was in awe to see that I hovered over most of the members there! There was a petite little thing there that was not even five foot I dont think. One person in particular surprised me. I have spoken to him on the phone before,he has a very deep voice which makes him sound like great big man, but he was barely my height. Hard to tell a persons height when only seeing their faces on FB. I think I shocked him as well because I am 5'11" but I sound like a little girl on the phone. Most people expect to meet a little petite person, the exact opposite of what I am! .... So, Another acro myth proven wrong...we come in all shapes and sizes, not just huge and gigantic. I spent my life hating being tall. Now I think, it's not so bad...the air up here is fine, I can see for miles and most everyone looks up to me. :o)

Aaaah the joy of Cpap machines

A few years ago I was diagnosed with sleep apnea during a sleep study. They connect you to dozens of wires and monitors and wrap devices around your head and chest and lay you in a bed with all eyes and eyes on you. "Just go to sleep and we will monitor you" I wonder if part of their training is to lay in that bed and endure this test. I think not because they would be far more compassionate if they had. Sleep is never a problems for me. My problem is not dying while I sleep. Thanks to Medicare I had gone a year without my Cpap machine which is a little machine that forces air into my mouth and nose as I sleep so I can not stop breathing. My recent sleep study results say I stopped breathing 70 times an hour. Sometimes I stopped for as long as 58 seconds...near unconsciousness...nice! My disease has achieved what MJ paid millions a year for...and for free, not strings attached. Without my machine I could sleep for ten hours and still feel like I had not slept in days. My body was never allowed to heal and replenish itself which is one of the goals of a body to sleep. I even had a TIA in my sleep once...slept right through it. Guess my heart and brain were tired of dealing with apnea that night. i woke up with a half drooped face which, within hours ran down my entire right side. Walkers and bed pans are not fun. Anyway, I finally got my Cpap a few days ago and not only a Cpap, but a state of the art Cpap! One that actually works. I am having to re-adjust my sleep habits and get used to having a face mask on at night again. The mask does not bother me at all except for a few places where it cuts into my skin but I figure my skin will once again toughen up in those spots. I mean is there really a choice not to wear it?  Few little cuts vs death. Pretty clear cut choice to me! The nightmares have not started yet but I am sure they will. The first time I had a Cpap every night for three months I could look forward to having nightmares all related to be suffocated..I drowned, people smothered me with things, my sister wrapped a belt around my throat one night.........Thank God, lots of prayers a nd a little Trazadone helped that! I am grateful for this expensive little machine that has been designed to look like a bedisde alarm radio....people are obviously not going to notice the 4 foot tube and face mask connected! If it were a 300 ound wall device....I would still want it. It is nice to breathe and wake up refreshed, ready to tackle the rest of the problems Acro has for me.

*********Not my best pic ever but these posts are designed for real life, no editing, no photoshopping! This is my wonderful Cpap mask. I have to use the full face mask because I can not breathe through my nose and my jaw growth and tongue prevents my mouth from closing
My newest C-pap mask. the other mask was leaving blood blisters in my mouth because my jaw can not close all the way. The skin was being pushed in between my teeth by the pressure. Also was losing too much air because of the deformities in my facial features.

Sunday, March 4, 2012

Welcome to my life

Hi everyone...welcome to my new blog: Life with Acromegaly. I have known for quite some time that Acromegaly affects my every day life but I guess I did not really realize until today that it consumes my life in every way. Every decision I make, every chore I do, every meal I make....Acro is everywhere. I have decided to create this blog, not just as a stress outlet for me but also to use as a way to show others with Acromegaly that they are not alone and to show those without Acro that life is not always what it seems. Bare with me as i learn how to blog...should not be long before I am a pro at this!